I was oh so very honoured to be wheeled into the office of the lord-high-neuro-epilepsy-god himself yesterday. I am sure I was supposed to be suitably impressed. I wasn't.
He started by telling me I don't have epilepsy.
"I know that," I said "My seizures aren't like that and I don;t lose consciousness, just awareness."
"It's not epilepsy."
"Yes I know, but can we stop the seziures?"
"EEG was clear."
"I know but the seizures..."
He said he knew I'd had an admission to hospital. I explained briefly that I'd had a lot of seizures that day and so the kids phoned an ambulance and I was admitted.
"The people who saw you are not neurologists," he explained, "So they don't know what they were seeing."
And were incapable of writing a description it seems. I happen to know as I saw the letter which said I'd had a couple of "muscle spasms". The letter was written by the female medic who hadn't seen me until later (post antibiotics) and didnt take a history. No wonder it's difficult to bloody tell what happened to me.
lord-high-god wasn't interested in the fact that both times I had seizures I had an infection.
I raised the question of ANS disorder because new research shows FMS may be dysautonomic. I tried to raise it without telling him his job (him being god an'all) but he was immediately dismissive.
"So," I asked "You know I have a dx of fibromyalgia. Do you accept it as a real disease or are you in the "it's all in yer'ead" camp?"
Fair question I thought. My goodnes the effect on him! He quite literally physcially squirmed about in his chair. He refused to answer but I guess that was my answer!
He launched into a lecture about how awful epilepsy is and how good it is I don't have it.
I've nursed people on the nasty end of epilepsy so I know how nasty it can be when it's uncontrolled. But I am also well aquiainted with lots of people with epilepsy who lead normal lives. They aren't in daily pain, stuck in a bloody wheechair and unable to think, see or stand straight. Not having epilepsy doesn't make my life any bloody easier!
I felt like telling him to ...well I'm trying to be a good Christian girlie so I;ll keep that to myself.
I told him I had been ill for ten years and was sick of it. All I wanted was the seizures not to happen again, especially as I'd had one in front of my 9 year old son.
Nothing moved him.
In the end he told me he couldn't decide what to do with me until he had seen a seizure. So, I have to make sure there's a film crew on hand for the next one. How lovely. How dignified for the patient.
How the hell was medicine practiced before machines? Hippocrates didn't need a bloody film. He took a history!!
Fortunately my kids have a sense of humour and are up for filming me when it happens again. My instructions had been that when it next happens they were to leave the room and let me get on with it and I'd call them back when it was over. My new instructions to the little ones are to leave the room and call for someone with a camera. Delightful!
To be fair I suppose seeing one is helpful, presuming he bothers to watch it.
POTS cardio next week.
God help me! Not trusting princes, horses or doctors here
He started by telling me I don't have epilepsy.
"I know that," I said "My seizures aren't like that and I don;t lose consciousness, just awareness."
"It's not epilepsy."
"Yes I know, but can we stop the seziures?"
"EEG was clear."
"I know but the seizures..."
He said he knew I'd had an admission to hospital. I explained briefly that I'd had a lot of seizures that day and so the kids phoned an ambulance and I was admitted.
"The people who saw you are not neurologists," he explained, "So they don't know what they were seeing."
And were incapable of writing a description it seems. I happen to know as I saw the letter which said I'd had a couple of "muscle spasms". The letter was written by the female medic who hadn't seen me until later (post antibiotics) and didnt take a history. No wonder it's difficult to bloody tell what happened to me.
lord-high-god wasn't interested in the fact that both times I had seizures I had an infection.
I raised the question of ANS disorder because new research shows FMS may be dysautonomic. I tried to raise it without telling him his job (him being god an'all) but he was immediately dismissive.
"So," I asked "You know I have a dx of fibromyalgia. Do you accept it as a real disease or are you in the "it's all in yer'ead" camp?"
Fair question I thought. My goodnes the effect on him! He quite literally physcially squirmed about in his chair. He refused to answer but I guess that was my answer!
He launched into a lecture about how awful epilepsy is and how good it is I don't have it.
I've nursed people on the nasty end of epilepsy so I know how nasty it can be when it's uncontrolled. But I am also well aquiainted with lots of people with epilepsy who lead normal lives. They aren't in daily pain, stuck in a bloody wheechair and unable to think, see or stand straight. Not having epilepsy doesn't make my life any bloody easier!
I felt like telling him to ...well I'm trying to be a good Christian girlie so I;ll keep that to myself.
I told him I had been ill for ten years and was sick of it. All I wanted was the seizures not to happen again, especially as I'd had one in front of my 9 year old son.
Nothing moved him.
In the end he told me he couldn't decide what to do with me until he had seen a seizure. So, I have to make sure there's a film crew on hand for the next one. How lovely. How dignified for the patient.
How the hell was medicine practiced before machines? Hippocrates didn't need a bloody film. He took a history!!
Fortunately my kids have a sense of humour and are up for filming me when it happens again. My instructions had been that when it next happens they were to leave the room and let me get on with it and I'd call them back when it was over. My new instructions to the little ones are to leave the room and call for someone with a camera. Delightful!
To be fair I suppose seeing one is helpful, presuming he bothers to watch it.
POTS cardio next week.
God help me! Not trusting princes, horses or doctors here